12 comments:

I never commented on the previous post because I couldn't find the right words. I still can't but I'll try.

When I was Joseph's age, I wish I had known people who had had this disease for years and still led productive, fulfilling, satisfying lives so that I knew it was possible.

I wish I had known that my life as an adult could be so full and wonderful, even with diabetes, that I'm not sure I would trade it in for a non-diabetic life if it meant giving up what I have now. (If I could keep everything and jettison the diabetes, of course I would).

I wish my parents had focused less on controlling the variables of my diabetes control and more on the fact that one of those variables was a ten-year old girl who wanted to be normal.

And yes, I wish no one had promised me a cure in five years. Because, as I'm sure you've told Joseph at some point in his life, you shouldn't make promises you can't keep. Promise that you'll work for one. Promise that his life will still be wonderful even if there isn't one - because it will. Promise that you'll let him stuff his face and guesstimate the carbs every once in a while so he feels like everyone else - if it means he can keep up the hard work the rest of the time.

art-sweet is wise. The only diabetics I knew as a kid were my grandparents, both type 2, both products of the one-shot-a-day regime, both of who died painfully. It was and is traumatic to have those as my two main diabetic role models. (I'm glad to be able to at least get to know others now.)

If there's one thing I've learned from this motherhood gig, it's that there are a thousand different ways to do it right, as long as you love your kids. It's obvious you love Joseph and that you're doing everything you do to give him the best shot possible, and that's the most important thing, I really believe that. It's true that being promised a cure in ten years was, for me, much worse than being told to get used to it. But that's me. I'm not Joseph. And you are in the unenviable position of trying to decide what's best for him; I won't second-guess your decisions.

What Joseph has that I never did is two parents who love him and who are committed to working on this with him. No matter how you tackle this cure thing, that's a huge advantage. He's a lucky kid.

Sandra,We will, all of us together, work very hard to make that cure happen. Please, as hard as I know it is, remember that you are not alone. Not for one moment. If, heaven forbid, a cure does not come...we will, all of together, support each other with whatever complications may arise and will continue to "atta boy" all of the wonderful accomplishments that come along as well.Big Hugs and Lotsa LoveVivian

I have bben thinking of you and Joseph since last week. The blog helped me face some demons of my own. I worry. About Tom's future, about what all those 'highs' are doing to his little body, if he will ever be able to take care of himself and his diabetes care; I worry about others giving him insulin.

I shall blaspheme and declare my belief that there will never be a cure. The pharmaseutical(sp?)industry can't and won't allow it. But the $ we raise for a cure will advance technology to produce tighter, easier control and less complications. I've stopped the "until a cure dance" and when my daughter with diabetes mentions it, I hmmmmmmmm, we'll see. and I'm sad, too.

After reading Art's comment, I finally get where she and other PWD's are coming from.

I do still hope for a cure, but when Brendon asks if there will ever be a cure, I am careful to just tell him that I HOPE there will be one. I don't want to promise him something that I'm not sure will ever happen in his lifetime.

At the same time, I do strongly believe that a cure will happen...I just don't know when.

So in the meantime, the best I can do for Brendon is to integrate optimal management with a "normal" lifestyle. Letting him be as carefree as possible is the best I can do short of a cure :)

Thanks so much for those very comforting words-- many hugs and lots of love to you, too.

Maryellen-

Funny you should say that my previous post helped you "face some demons." Writing that entry and reading all of the responses to it did exactly the same for me.

And yes, I do worry about Joseph at school-- but not nearly as much as I used to. We've got a good relationship with the nurses there, and Joseph has just gotten so darn good at troubleshooting when bgs are funky.

It also helps that his teacher this year had gestational diabetes (so she knows the significance of those highs and lows) and the student teacher in his classroom has a 4-year old nephew with type 1.

And, I met these two teachers last week and really just like them.

Now, Joseph does still call me at lunch time for a "bolus consult" and during the day if he's having a low. And usually we do exactly what he suggests-- I just want him to always know I'm here if he needs me.

Quite frankly, I'm far more anxious right now thinking about next year when he starts middle school-- new school, teachers, nurses...

Anon-

Not blasphemous in the least. A nagging fear for me is that the frighteningly powerful pharmaceutical industry will somehow suppress a cure-- but I can't stop hoping (and sometimes, really believing) that there are enough of us out there to stop them from succeeding.

Shannon-

I absolutely agree-- we need to let our children be kids, first and foremost.

There are times when we let Joseph "stuff his face and guesstimate the carbs" (as Art-Sweet mentions above) -- probably a bit more often than we should.

And "Gramma cookies" are not off limits-- they're just not the best choice when it's late and his bgs are running high.

And finally, just this Wednesday, my boy did get to go to the pool with his buddy, Zack and his family.

Basal testing prevented him from accepting the invitation that prompted the previous post (we had to test that day as camp was less than a week away; he had brand new basal rates that were causing some scary lows prior to our testing and adjusting; and he had other activities the remainder of the week that made basal testing another day impossible).

Thankfully, this kind of testing is rare for him.

So how did this outing go?

Well, his set came out just an hour into his time at the pool.

But he had plenty of insulin on board; checked himself every hour; checked out many girls in bikinis; built castles in a giant sand pit; and dove into the deep end of the pool.

There is life with diabetes. I would love for their to be a cure, but life with diabetes can be wonderful....I can imagine how hard it would be to get your mind around though, as you are just embarking on this life. For everyone, I hope there is a cure, and I think you are doing fabulously with your son, and he is doing fabulously as well! Thanks for your wonderful look into your life!

Hope is a wonderful, essential, breathtaking privilege, and as a new diabetic (3+years), I know how important it is. It keeps us going, provides momentum for change and advancement. I love that you and Joseph are so positive, and I love that you both are looking forward.

I look forward as well, and I am very hopeful. But I also remind myself every day that my life is now, and I am diabetic, and in order to live fully, I must embrace that, as well.

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About Me

I'm a mom of two children-- a 9-year old girl and a 16-year old young man. In addition, I've been vice president of a marketing company; a full-time student (English major); a product services manager for a financial publisher; a childbirth instructor and birth assistant; an aspiring sculptor; and most recently, director of information services and outreach for a non-profit government watchdog group-- in exactly that order.